100 types of PN?? Wow. How l am ever going to be diagnosed? So many to choose from. Will they find out where it's coming from? I really, really hope so. Then at least l can work on healing myself instead of being stuck with this.
My husband said yesterday, that we will not give up till we find out why l would have PN? Not even sure l have it, but it sure looks that way. Even though it can be something else.

On Wed l see the neuro, l just have this feeling his going to play it down, like it's no big deal and send me on a couple of tests and say, they don,t know why l have it and that's it. Well, where does that leave me? It's just to easy for them to brush it off like it isn,t a big deal, because for me it is. They see so many patients and it just feels like we are another number to them.
I really hope this isn,t going to be the case. Last time l saw him he told me, to seek mental help and to go on med for anxiety. Has he ever thought that the reason l am anxious is because nobody could tell me what is going on with me?
Dizzy everyday ( back then) would make anyone go anxious.

Sue

SUE, I don't know much about PN but I do know, as a lot of comments on this site also suggest, that worry and anxiety can make things worse. This has certainly been the case for me.

I thought MrsD comments were really helpful I am really working on my ANTs at present. One of the things I have picked up is that the people who take the bull by the horns and get proactive seem to have much better results. Between my bouts of worry and anxiety I am already seeing this as an opportunity to improve my life, but being proactive and positive is easier said than done.
It's probably a case of working with what I've got rather than trying to fix it.

Sounds like you have a very supportive husband. I hope you had a good birthday.

If they figure that out from the testing, or get a clue, that won't be an issue.

With about (depending on who you ask) about 30% - 40% of PN patients.
For many people, it may not be as big a deal as other things; it's a matter of perspective, attitude, and different for everyone. For many, it's more of an inconvenience or nuisance. Not all patients get all symptoms, and not all have pain. But those folks may not need support groups, so you may not meet or hear about them.

Finding clues to a cause is another reason for keeping a journal, and getting/keeping all medical records, test results, & reports. Some people have found the Liza Jane charts & spreadsheets helpful in organizing & tracking tests, and determining which ones to ask for depending on results of previous tests. You can find them at http://www.lizajane.org/

I think it's important to be aware though, that except in a few cases where certain specific causes are determined, treatment is usually pretty much the same - treating the symptoms. The same applies to many causes that are found.

What you described is pretty much how I was treated by a couple neurologists (one was the leading PN guy in the area, at a major medical center); they told me they couldn't find anything specific - that I was idiopathic, offered me a prescription for gabapentin, and told me I could check back in a year (if I wanted to) but there was nothing more they could do for me.

I got similar treatment several years ago when I got IBS (initially dxed as Crohn's Disease). They sent me on my way, saying almost exactly the same thing. I did my own research then, found a treatment that worked, and I've been fine ever since.

So this time I did the same thing; I got online, did a lot of reading & research (which is still ongoing) and I'm getting better (albeit more slowly).

Finding a cause would be nice, but I'm not going obsess over it or make myself worse, or drive my family nuts, stressing over it. I would rather spend the time & effort finding things that help, and enjoying life as best I can.

I'm still looking into & trying things, and keeping notes in my journal. I think that's why many of us are here, sharing what we've learned, our experiences, and if not getting better, trying to halt/slow the progress.

Doc

Also... the very basic tennants of pain.... involve stopping whatever is causing it.

Our nervous system's perceptive job is to signal that something is wrong. The fragile nerve endings are supposed to tell you that an injury is happening.

With much of PN, some injuries may be chemical and not visible to the naked eye.

Having an exterminator come to your building and spray a potent chemical to eradicate insects, may react with YOU and set off the warning system. Consuming certain drugs or foods, may do the same.

It is like a car alarm, may set off with a light touch to the car, by a dog or cat, or the wind, or a bird landing on it, and set off the alarm, when no human is stealing it in fact.

Our nerve endings are an alarm system, to say--- we do not like "this" (whatever "this" is).

Because the peripheral nervous system has to be sensitive to signal us to stop what is causing it to go off, there can be many triggers. Pain can come from an injury, accident, surgery and those are visibly apparent. We see and understand it. With chemical injuries, or infectious ones, we cannot see it happening with our eyes, and therefore only the pain can be the signal. And with the complexity that humans now live with, the environment is so complicated, that we have to figure out what is going on. You don't get training in school in how to read your own body. Often you don't get other training you might need too, like parenting a new baby, how to find a job, how to be a supportive spouse. If we are lucky our family network is positive and provides this "training". But having a condition like PN is a shot out of the blue, that we don't have training for and therefore don't know where to look to fix it.

Doctors have always suspected things they cannot see, as either mythical or psychological, so when you go to them, they have little empathy for helping. Doctors cannot see pain, unless there is trauma or swelling to indicate it. So they tend to minimize it, and think it is imaginary or evoked for a sympathetic response. Back in history, doctors did not know bacteria existed, and thought "bad air" caused malaria, or plague. In history some disease was at times looked at as a punishment from God. If you read any medical history books you'll see examples of the evolution of "medicine" and that attitudes are still taught to students in medical school. They are for now our "modern" attitudes, but say in 50 yrs we'll look back on today and roll our eyes, and say "I can't believe they did that back then"!

So the bottom line is that where medicine is still not well along in effectiveness, we as patients are left to fend for ourselves. With education, computers, books, and other skills, we can do some things ourselves. Learning how your body works, is a skill you can learn, to help yourself in many ways. But to expect a doctor to give a pill after making a pronouncement as to what the cause of a sneaky thing like PN is ...is just not here yet.
We think that taking a pill, like for headache, or antibiotic for an infection, is how PN is going to be treated. And it just isn't so.
IVIG and similar strong IV meds, remain the only treatment for certain types of PN which is not the common majority. For the rest of us, finding tricks to reduce pain, or to remove a chemical trigger, or help a metabolic chemical error like diabetes, is all we have.

Many neurologists don't really put forth effort for sensory PNs.
They figure if you can walk and talk normally, you are lucky.
They cannot feel YOUR discomfort or measure it, and therefore it is not real to THEM. It is very frustrating and really, it is the exception here and not the rule to have a doctor who will go that extra mile and really do a good job with PN. Some people do come here who have good doctors, but many find little relief from doctors at all.

Amen. ...And that's the short list. When I started high school, there was a course taught in senior year called, "Civics" which in addition to the theoretical and practical aspects of citizenship, also dabbled in ethics, philosophy, civil & Constitutional rights, and political (governmental) theory. By my junior year, the course had been dropped from the curriculum, ostensibly for budgetary reasons. Needless to say I was both disappointed and outraged; it was one course in school I was actually looking forward to as containing real-life practical knowledge. Basic economics (as opposed to "home economics") was another class/course dropped from the curriculum and lost forever. I had one particular teacher in another subject who was called on the carpet (and ultimately dismissed) for teaching practical life skills (like decision-making, respect for women, & critical thinking, for crying outloud) beyond the scope of the syllabus. I learned more practical and valuable lessons about life and living from that guy than from all my other teachers combined. IMO, he deserved an award. I could go on....

Like... Oh, I don't know... AIDS?

Like Arizona just passing a law defining life begins two weeks BEFORE pregnancy...

I have a few 19th century medical & veterinary books. They used to be great fun to read aloud at parties after people had loosened up a bit... We even made a board/parlor game out of it.
A couple of examples that stuck in my mind:
Treatment for lead poisoning - mercury
Treatment for mercury poisoning - lead

I don't blame the doctors entirely; I think many feel as helpless as their patients in not being able to help/do more, and professional stoicism prevents many from expressing empathy. (Witness: Dr. Rob's blog entry) I also believe their tried & true system, which held up for over a century, and which they fiercely defend, is due for review & overhaul. (If it ain't broke, don't fix it. But it's running like a Model T on 2 cylinders, and they won't even take it to a mechanic [Lean 6σ, etc.] to see if anything can be done.) Rather than seeing any concerted effort there, I see more of an evolution, which is of course slower, and takes much longer than anyone would like. Changing the attitudes of an entire culture is known to take at least a generation. Given the conservative nature of the medical citadel, it may take even longer.

Doc

Hey Doc, off topic for the thread but I really want to know: what did you do about your IBS? A dear friend of mine is struggling with that and, um, I like the way you think things, so your findings will be very much appreciated.
Thanks,
dyc